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Kitsakatsa

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Posts posted by Kitsakatsa

  1. I work a full time job that is often more than 40 hours/wk, a part time job, and this is the first few months that I haven't been in school also. I am very grateful for that. At one point I was working both jobs and going to graduate school full time. That was very hard and I was more than miserable.

    Now I have to figure out how to pay those student loans back. By this time next year, I'll probably have to take a third job. I wish there was such a condition as "working disabled". I really feel like the perfect thing for me would be to work part time, but I cannot afford anything like that. I don't know how people manage it. If I tried, my parents would probably put me to work anyway. They're German and Irish and that means no one gets bed if there's work within a mile to be done.

    Sometimes I dream that I could hold up a post office with a squirt gun and be sent to prison for years. I would get a break with the work and I would live life in a cot. There are times when it doesn't seem like such a bad deal. I'm sorry to be so dismal. I have much to be thankful for. There are just more hard days than easy and some times I feel like I don't have as many choices as I would like.

    Kits

  2. It sounds like post prandial neuro blood volume drop. Something that most pots patients have. When you eat, your blood flow fluctuates to your digestive area to work on digestion. Since pots pts have problems in that area, it really focusses in on it.

    That leaves a lot less blood for your head. I've seen small naps recommended for the time after meals.

    Hope this helps,

    Kits

  3. I wouldn't panic if you can't get the shot. My doctor said that in the category of those barely functioning (including his POTS patients) he has seen those patients get much worse and debilitated for a period when they received the vaccination. He's recommended no shot for those in that category. He said he's hospitalized too many of them to be comfortable with anyone else getting it. He also said if I decide personally to get it that I should contact the office so they can be aware and keep some appts open. He also said that there is emerging evidence that it has contained within it a live virus that is derived from birds.

    Ok, yeah, no thanks.

    Its everyone's personal decision with their provider, but he has alot of walking sick patients and I trust his experience. There's not data, its the trend he is seeing in his own patients.

    So, I wouldn't necessarily panic or stand in a long line for it. Esp is you feel you've already had it.

    Kits

  4. Okay, this is what I was told but don't panic until you talk to a doctor about it.

    I was diagnosed with Adies this last spring. I have an eye doctor that did a double residency in neurology. Every year, he said he needed to conduct a special occular neuro exam and every year it has been negative for any problems other than far sidedness. Well, this spring he said that that I had positive Adies in both eyes. He said that it manifests in one eye, and then will eventually manifest in the other eye. He said that it is due to Dyautonomia. He also said that those with Adies will eventually lose their deep tendon reflexes (the kick response when they hit you in the knee with the little hammer) and Adies is an indicator that there are lesions on the 7th or 8th cranial nerves. This all sounded pretty bad to me and I went back to work and bawled to my coworker surgical nurses.

    Here is why you shouldn't necessarily panic. My primary doctor consulted both the eye doctor, research, and a neurologist and this is what he said. Adies is a manifestation, but once it is there- it is there and its not going anywhere in either direction. It is permanent, but it does not get worse. There is no treatment because once you have it there is nothing to prevent because that is just it and it will not get worse. He said the most of Adies is that it is dang irritating and people just have to adapt to it- no one has ever lost their eyesight. Second thing. My deep tendon reflexes are now gone. He hits the hammer on my leg and nothing. I have not noticed a difference at all. I was afraid I would walk wierd or lose my ability to walk. No difference. No problems. Third thing. The cranial lesions result to nothing as well. At least so far, there has been nothing that has resulted from it and the doctors feel that except for Adies, we would have never known they were there.

    There is an article that talks a little (not much though) about Adies and dysautonomia that Dr. Low from Mayo participated in. You can access it on pubmed.com. Apparently they felt that those with Adies has a particular type of dysautonomia that is advanced. So, we're the over achievers of dysautonomia- nice! They suggested a medication for it, but it has been 8 years since the article and my MD did a reference search on it. He said that he was not comfortable trying the med because there was no followup to the article and he felt the med must have failed to produce a result and may have actually been found to be harmful.

    So, that is all I know. About the same time I was also diagnosed with hydrops of the ear which is like Adies, only in the ear. Have you been experiencing hearing loss?

    I hope this helps.

    Kits :)

  5. Just an ENT and it was from a basic hearing test. They could see eustachian canal dysfunction and some of my symptoms were when I jumped up from sitting that the hearing would totally go. Apparently, that is typical of this problem and correllates with dysautonomia. This doctor works closely with an Internal Med and Neurology office and so sees a good amount of stuff like this. There is no treatment.

    I was lucky that I didn't have to go through more testing and specialists though.

    Kits

  6. She needs to be tested for Shy-Draeger. If that is positive, there will be a decline of health. We have come to understand that if the test for Shy-Draeger is negative, and POTS is her diagnosis that there should not be progressive nerve loss. Major Universities can run the test. she may have had the tests already. One involves putting electrodes on extremeties and testing the response. It feels like little burnies or as my brother calls it "Jack Bauer is in the house"! The other involves having her breath in a valsalva maneuver. This is basically like blowing up a balloon and makes most POTSy's feel like crap. You may remember these tests.

    Now, that said I have experienced both new nerve damage to my eyes and ears this year. I've been told that it falls in line with traditional dysautonomia- but that it too will not be progressive. Her complicating illnesses may contribute to a decline, but as far as I have read (and it has been extensive), there is no expected ongoing nerve damage with POTS and declines have been due to other illnesses, change in lifestyle (having to take a job), etc.

    Be really careful with Dr. Google. My mother was all in a panic from the informal stuff that she has read. Stick to reliable sources like Pubmed.

    I hope this helps. You seem to be a very caring mother.

    Kitsa

  7. Yes, this year I was diagnosed with Endolymphatic Hydrops. Apparently its permanent and its from dysautonomia. It sounds like everything is in a tin can and the bass in the normal, natural world is horribly loud. There are sometimes that I cannot hear and everything sounds muffly. Yes, fabulous.

    I had never heard of it until I had it. One of the hidden joys of POTS, I guess.

    Anyway I wanted to let you know that you are not alone. I wish I knew more about it. I am worried about vertigo in the future.

    I think it must be a really small subsection of people that get this.

    We must be the lottery winners...!

    Kitsa

  8. I had swine flu in June and I did a post about it in June about how it was and what helped me. I don't remember all that I said, but I had a grocery list of things that I really needed. I'm going to look it up and get stocked up again.

    We have major and detailed plans in the hospital and at our Manager's meeting this week they said that scientists have found that this flu actually turns your immune system against you. The stronger your immune system, the stronger you will fall. I haven't looked for written substantiation of that, I think the results are awfully preliminary. They suggested that it may change the way they treat sick patients. I don't think anyone knows what that will look like yet. Pretty spooky.

    One thing about my post that we found out later was that my K+ was at a dangerous level. I would urge anyone on florinef to get a potassium check after you're allowed back into civilization. It probably accounted for me feeling so, so bad.

    Well, with the swine flu around, egg nog is looking not so dangerous!

    Kitsa

  9. I've given up on dating.....completely.....for infinity!

    There is one thing I do know though- I had the unfortunate opportunity of interviewing a candidate who seemed to be a perfect girl. Long blonde hair, skinny, bouncy, whatever. You know what we girls always think that they guys want. Well, after 10 minutes of talking to her, I was ready to rip my head off. The perky sound was giving me hate seizures and her personality reminded me of the fake Giorgio that came out in the 80s. She may have even had it on. She was also quick to tell me that everything thinks she's perfect. I took this to mean 1. She's a twit, 2. She has no major medical problems.

    Point is, 10 to 1 I would have traded her for a POTS patient even with all their problems. I would rather spend any amount of time with someone who is inwardly strong, grounded, logical, realistic, tested and smart. In fact, I hired an OI girl once to rescue her from her standing job and even with all the leaving work early and sick calls it was nothing because she had all of the above qualities.

    So, I can't figure men out usually, but when I think of the type of person that, at least, I would at least tolerate in the workplace- POTS is not the most tragic scenario. Maybe then there are men who think that maybe POTS isn't the worst trait and who don't mind fetching McDonalds fries for us and hauling in the groceries....

    Here's hoping,

    Kitsa

  10. I don't think its dumb.

    I think some of the reason why I have been able to work is because I've literally kicked my own butt out my door every morning for the last 6 years. I didn't have it easier than anyone else, but now it is easier because I pushed myself in a direction that was reckless, unreasonable and impossible. If you don't push your limits, those limits will define you. Just like the song: "Sugar, we're going down swingin'"!

    Good on you.

    By the way, I'm not judging anyone-that's not my style. I just know what I had to do for me and my sanity. I'm still horridly sick. I don't pretend I have all answers. I don't want anyone to feel bad.

    I just think you are making a brave choice. Anyway, if you feel particularly bad that day- just make sure you faint and fall directly on the bad guy!

    Kits

  11. Here's my 2 cents, which is all I have either. If I were in your shoes- I would switch jobs pronto. Being a custodian cannot be easy on your POTS. I work FT and if I were a custodian, I would also only be able to work part time. I would be miserable. I don't know how you are doing this!! If you got a desk job, you could work enough to get benefits, I bet. Right now, you are in a crisis and you need to do something differently. I bet you are going without meds too. Here are a few ideas if you want them:

    1. Get a Patient Accounts Services job at the hospital. They generally hire this dept with no experience and if you are sane- you get the job. It is easy work, desk based and in a variety of shifts. Then, you would not only have coverage, but the coverage your hospital takes and they would be more willing to work with you because you are an employee.

    2. Telemarketing. This is not what it used to be. Most jobs like this now are customer service lines for Nabisco, etc.

    3. This is not a desk job, but I heard that you only have to work 21 hours per week to get full and free benefits= Starbucks. Plus, you'll get tips.

    4. Colleges and Universities. There are scads of desk jobs and the benefits are usually top notch. They also hire with virtually no experience.

    I would be happy to pimp out your resume for you (I'm a hiring manager for a hospital in Utah) and give you sheets of questions they'll likely ask at an interview. Just email me on the POTS email.

    Bascially, that job is doing nothing for you. You don't need to work harder, you need now to work smarter. Plus, if you work a desk job you can probably go to work on days that you are feeling bad- because you can get through them.

    Kits

  12. I have a doctor that is 1/2 angel and 1/2 big giant nerd and he said something once that has changed my mornings ever since.

    He said everything that you guys have said about hydration etc, but then also said that what takes a normal person's body less than a second to respond to an upright postion will take a POTS body until 2pm to adjust.

    He said to get up at one point and lay in the recliner with the feet in a position that is neither completely up nor completely down (some recliners have a mid position or you can put an obstacle there under the foot rest). Tilt the head of the recliner so that it is neither completely up or completely down (this is called reverse trendelenburg) and sleep in that position as much as you can before rising completely. He said that it would be absolute best to sleep this way all night, but at least give your body a few hours of this and it can respond to that instead of going from flat to upright.

    On the mornings I do this- there is a HUGE difference. I also take my pills an hour before I wake up. I feel less like I am fighting my body and more like I am working with it.

    Kitsa

  13. I don't have sweating, but there are days that I am so hypersmelling everything that I wonder if 1. I'm going crazy, or will by the end of the day, 2. Have suddenly gained super powers. I work in a hospital, so you can imagine how distressing this can be! I can smell sheets, shampoo, water, everything at all once. It doesn't make me sweat but I wonder if the area of the brain that identifies smell is connecting with dysautonomia in some way. Wait, is that the hypothalamus? I forget. I'm not a clinician and I took classes of that sort BEFORE the Adderall LOL!

    When I was first experiencing the sputterings of POTS when it first started, I would be really sick and smell motor oil. My mother had the same problem when she experienced and after her brain hemmorhage. Her brain was shifting blood to areas that were trying to compensate for the damage. I wonder if the same is true of POTS patients.

    I bet Dr. Low at Mayo would love to see you though with your smelling=sweating thing. That sounds like the kind of patient he would love.

    Kitsa

  14. I chuck the laundry over the loft at the washroom and nearly give the cat a heart attack, which is great fun.

    I keep a yoga mat in my office at work, claim it is for after work yoga, but really it is for after lunch naps

    I have a handicap pass so I don't have to walk far on bad days and it comes in handy on vacation

    I use the handicap pass to check out at customer service on the day after thanksgiving instead of waiting in the long lines. Flash that- they don't know what to do besides let you check out there. I take advantage of their minimum wageness and their overall holiday stress level.

    I get mini sizes of cottage cheese for snacks, you get a salt boost and you can pretend you are eating whipping cream instead

    I use rubber cleaning gloves to put on my medical stocking tights with. It keeps your fingernails from snagging them and they pull up at lightening speed.

    I have an alarm clock with two alarms. One is for pills, the other is to really wake up. That way, I don't have to necessarily be conscious for all of the nausea.

    I have a play list on my ipod for when I'm not feeling well, or for IV infusions. It is ambient music and it helps relieve the anxiety and it goes well with saltines.

    If I'm at Target and I can't make up my mind, I call my Mom because chances are- I've been standing too long and I've found myself in the candle aisle or whatever and I don't even need candles. She'll tell me to move or sit down and after standing long enough, I don't realize that I am not getting blood to my brain. We call it the candle call because for some reason, its nearly always a call from an aisle of stuff I've just spontaneously decided to collect.

    There's probably a hundred other tricks, but these are the ones that come to mind.

  15. I'm annoyed right now at Campbell's Soup. I keep seeing ads that they've swapped in sea salt for regular salt in their tomato soup to lower the sodium content.

    I keep yelling at the TV: "No! Keep the sodium in there!" :rolleyes:

    I will be yelling with you. These low sodium people are so annoying!! I have a co-worker who concerns herself much too much that I eat salt on purpose. She prides herself in her low sodium lifestyle. I just say "whatev, its people like you who are wrecking the high salt dream world for the rest of us" and then I say "oooh, Friday night- time to get wild with the salt shaker". I guess I bring it on myself, LOL! Ah well, no one had ever mess with the Top Ramen or it is smack-down time I say! What is America if you cannot eat a 2000mg sodium meal for 30 cents?!

  16. Just FYI while we're on the subject:

    Single-Dose Monovalent H1N1 Vaccine Appears to Be Immunogenic Medscape Medical News

    http://mp.medscape.com/cgi-bin1/DM/y/eCaeC...mp;uac=114819MR

    This news release on Sept 11th cites a study that suggests that people receiving the vaccination could have an immune response to it. You should consult you doctor about your individual risk factors. There was a study published by Mayo 8 years ago by Dr. Low that suggested that POTS is itself an immune response. If this is true for an individual, it would stand to reason that this vaccination may carry more risk factors than safety factors. I have an advancing of POTS this year to my ears and my eyes as cited in the Mayo study and so my physician has elected that I should not get the shot. Whatever the outcome, I think a physician would be onboard and armed with a plan if they were looped in. I know sometimes we feel like we are bugging them, but I wanted you to be aware of this news brief.

  17. Slowly, slowly, slowly! I am a total turtle bum when it comes to exercise and I still get sick. I know it helps, but there is no other way but slowly. If you watch Biggest Loser, do it with a pint of ice cream- not with a treadmill! POTS people need their own category of what they can do. These are not excuses- if you do too much you will be sick. No one should encourage you to be sicker than you are. Everything takes a billion years with us. Don't get discouraged!

  18. Everyone has a backpack that they must bear. In our backpacks are many items. Some items are very heavy now, but will be helpful later (like water). Some of us have others to help carry our backpack down our paths, but others also have those who hang on their backpack and make it heavier. As if hanging on your backpack will somehow validate the objects that she has herself placed in her own backpack.

    I will help carry as many backpacks for others as I can, I will not allow anyone to place stuff in, or hang on my backpack. I would set limitations with this sister. You do not need this and she is using your burdens against you. Somehow in her ill mind, belittling your burdens makes her feel superior to you and she is validated. I would not allow this to continue. I would see her for a set amount of time at a park or whatever and then lunch the next day, etc. I would not let her in to judge you and your backpack. You simply have to ability to limit her power.

    Having this backpack of my own has made me more compassionate towards others, but it also has lead me to have the ability of discernment. We share a condition and so I know the same is true for you. You sound compassionate to her, but let's pull out the BS meter and take a measurement. If she is truly not well mentally, you should limit the influence that she has over you and your family. It would not be easy, but she has full reign over you right now and your email doesn't exactly sound happy.

    I wish you the best of strength.

    Kits

  19. Nausea is main symptom. I take a combination of compazine, clonidine (at night- helps the next day's nausea), and Zofran.

    The Zofran is IM (Intramuscular) injections. The pills are spendy, but the Zofran IM is given to you in vials and usually available through home health, which (at least for me) makes it much, much cheaper. You get a supply of syringes and long micro needles. You can hit it in in the hip, or right above the knee. I have alot of scar tissue there, but it is very much worth it. I am prescribed 12 mg up to 3 times per day.

    I whole heartedly recommend this route if you are not helped by other means. Also, there is Marinol, the 'juana derivitive but it gave me the munchies! LOL!

    Good Luck,

    Kits

  20. I have two cents that you may not want.

    There are meds that may make the difference between working and bed bound. I notice from your sign-off that you are trying the wholistic route. It might not be working. My way might not be working and you could argue that my meds are damaging me even more. There are days I would agree with you, but on the days I miss my meds I am in bed. Also, sadly, I gravitate towards whole and organic foods- they just taste better. Every time I do- I miss out on the salt and I feel much worse. I don't think there is a right way. I respect your beliefs. I just know that eating totally healthy and taking 0 meds would put me down in bed. I wonder if there is a middle ground somewhere that might help you.

    Keep Hope,

    Kits

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